The sun is rising up over the trees of my hollow , painting the pines, the maples and the oaks with a magic that only God himself can bestow. The dark sentinels recognize that day is starting and gives way to the light. It is quiet. The kind of quiet that can only be found when we still ourselves. No television. No cars. Only the quiet of the reality that , no matter where we go, possessions don’t matter. Outside in the forest packages tied up in bows , really have no value .

I’m sitting here in my little frame house, warmed by the fire ,of the wood -stacked by my husband (before he headed off to his job) , a handmade afghan on my feet , a tiny , furry dog making snuffling noises as she settles her way ever deeper into the cocoon she has made for herself.

It’s that time of the year again. Where people seem to turn into frantic genetically engineered gerbils stuck on a giant wheel that spins ever faster. I am often agog at the speed they are able to manage, and wait in a kind of morbid fascination wondering if the wheel will fly off into some other galaxy at the current rate they are going. The stores are jammed packed with those who carry those sacred lists ; as though those pieces of paper somehow carry the keys to true happiness, or even the map to Ponce’ de’ Leon’ s fabled fountain. Gripped so tightly , and conversing to some unseen person ( themselves?) , that I can’t help but ponder if a trip to Bedlam might needs be in order.

I know they are doing their best , to make the ones who made those lists happy. That “perfect” gift . The end goal being , to see the lights in their eyes shine so brightly that all of the effort was worth it, thus granting them Le’ons immortality. and that ever elusive JOY. But…………….temporary. Because those toys are tossed aside by next month’s end, as the next “it” thing is discussed, in terms of , “Well, NEXT year I am going to ask for ………………!” Bigger , better, more expensive. So back on the gerbil wheel the givers go.
Til suddenly their legs, finances, stresses, and sanity ; give way, and the wheel comes to a grinding halt. It is an unsustainable momentum……… the mythic fountain just out of reach.

For what has been obscured in the misty fog of store lights, faux snowdrifts, bedazzled costumes and the street hawkers is this : immortality , the fountain of a memory of youth is not hidden in any of those things. It’s hidden in the decisions you’ve made every day , of every season. Summer; in laughing with those you love over some ridiculous joke . Fall; in feeling that full crisp air hit you while you walk down the street having a conversation that will never be remembered, but the moment will. Spring; in the first flower spotted by someone and you realize that Winter is truly over; and Winter ; all of Winter, when the weather forces you indoors to sit together talking about “Remember the time , we?” and “I will never forget the day that we ……….”

Those are gifts. Not in department store boxes, not in bags, or in the ubiquitous gift cards of our era. THOSE.

May we never become so jaded that we forget that THOSE are the gifts worth remembering.

These are all things I have have said to me, by people WITH chronic illness and even people WITHOUT. Apparently, if you suffer from a disease, you get your “humor card” taken from you , and it is now NOT okay for you to be a happy person, or find any kind of joy in life.

So , I’ll start this next paragraph by saying, lest you think I have no right to speak on this matter, that my diagnoses in order are, Systemic lupus , heart failure, Sjogren’s, Raynaud’s, POTs, dysautonomia, and EDS. So trust me, I have been around the medical merry-go-round. I many times have pain that would put most people on the floor, have had so many surgeries, that they don’t give me enough lines on the medical forms, and so many allergies that they no longer even put them on the ER bracelets. I just get a big red one, that says, “See List”. I have been sick since I was about 7 ( I was so sickly that my Grandpa called me P. , short for PeeWee) , and VERY ILL since I was 14. I didn’t get diagnosed until I was 19, so I had five years of basically every doctor saying to my parents, “She’s just lazy. ” and “She’s just wanting attention. ” So you develop a thick skin, and I developed a sense of humor from the craziness of it all. Sort of like OR doctors, ER doctors, etc. That gallows humor. I CAN and DO find the funny in just about any situation.

I’ve learned over the years that there are two types of people, when they find this out about me. They either “totally” get it, and love that I make a joke of it, or they are so offended they can’t take it.

But my question to them has always been. “Well what SHOULD I do? Should I be this joyless, soulless person, who is angry about things I can’t change or control? Should I rail against the Doctors, the nurses, the techs and even God?” If your answer is “Yes!”, then my reply would be, “And what would that help?”

Rather , isn’t it better to find joy where you can? To laugh over the quite frankly ridiculous things that become necessary when you’re stuck with a lifetime illness? Isn’t it better to be positive?

I am sorry if you think it’s wrong somehow , that even though I have more issues than you can shake a stick at, that I am happy anyway. I am sorry if you find it strange that I am able to laugh , not BECAUSE of how things are, but IN SPITE of them. And to be quite frank, and I am sorry that even though things are hard, that you have no way to smile.

But I am NOT sorry that I AM able to find joy. I will not apologize for coping with the circus that is my life , with humor. ( P.S. Below, find an attached article about the effects of gallows humor and how it helps us cope in stressful situations. ) https://meded.duke.edu/practice/wp-content/uploads/2014/07/Gallows-humor-in-medicine.pdf

Pain is a funny thing. No, not funny “haha”, but funny “intriguing” . Pain is our body’s unconscious reflex to avoid something injurious, or to an injury or illness. In theory, ( scientifically-speaking) it can only be felt in organisms with higher brain function. (Although how they would just that I don’t really know, might not WANTto know. )

Most people bless them, and their good fortune, have only known physical pain from the standpoint of accident, injury, normal illness etc. They remember these things, but it isn’t an everpresent thought, or ongoing mental conversation they have to have.

But what would you do if you just woke up one day, and the pain never went away? EVER. Some one once asked me what having my condition was like. I told them, “It’s like your body’s pain function is an old FM radio, with knobs that can be turned up or down. Most people , their knobs function like they should, being able to be set a certain way , pretty much most of the time. But my radio, the knobs are not only non-functional, they’ve been knocked off completely. So I have no way of even adjusting any of it. It is set permanently at full volume. ” Yeah, fun times.

So pain HAS made me the “odd one out”. When you are 19 and are such an odd medical “rarity” that the doctors bring their students around to “observe” you. When you are 21 and spending more time in hospitals , than your peers do in clubs. When you are 25, and the doctor asks, “Where did you go to medical school ? “, (in all seriousness) , because you have more medical knowledge than his interns.

But it’s made me the odd one out in other ways as well. When you are 19, and can empathize with any elderly person, because you have so many medications. When you are 21 and are able to help another person get a diagnosis, and help them realize, “I’m NOT crazy . This wasn’t all in my head!” , and when you are 25 and are able to educate others about many , many aspects of life-long illness.

You adjust. But you do NOT “get used to it”. Trust me. Mind-numbing, bone -deep, “Oh God kill me now.”, pain is NOT something anyone EVER gets used to.

So don’t be fooled by the smile you see someone wearing. You have no idea what it is costing them.

I’ve never BEEN normal. It was a certainty in my bones , a knowing even. An intrinsic feeling , yet not a difference that I felt was a problem. I didn’t SEE it as being a difficulty. I knew I was not like other people. I don’t say that as a form of braggadocio or as a way to say I was better or somehow on another plane. I came into this world , a wild animal. For most of my early years I refused to wear clothes, driving my mother to insanity. I thought going about skyclad was the best thing in the world. When she DID manage to keep me clothed, it had to be boy’s clothes of the most ragged variety imaginable. Jeans, cutup, cutoff, dirty, t-shirts the greasier the better. My Dad’s castoff welding hats and goggles. A pair of corduroy Levi knickerbockers. Cowboy boots with the soles worn completely through. A set of leather chaps that a friend of mine had outworn. I spent my days out of doors ;climbing every tree within 10 miles of my house. Skinnydipping in the Little Missouri river until I was sunburnt to the color of red ripe watermelons we gommed from Granny Jo’s garden in the evenings. I don’t know how my mother kept from killing me in those years; I never shut up, when I WAS home, which was seldom, I despised school work; what was I going to need all THAT useless information for anyhow, I wanted to be any and everywhere besides chained to that drudgery . I brought home any and every creature I could find , that slithered , crawled or flew, and was sure that both my mother and sister would find homes for them, and be just as fascinated as I was. ( I was wrong on both counts many times. ) Come to think of it, I don’t know why my SISTER didn’t kill me in all those years. I’m sure she had just cause. She was all the things I wasn’t . She was clean. She was a whiz at school, quite dedicated to it actually. And she actually kept her clothes ON. She swore on many an occasion, that “For the love of GOD, Nette, you are adopted. I swear. You actually belong to some nudists somewhere!!” Heh.

I guess , to me, life just all seemed so bright, amazing, full of things to see. It still seems that way. Everywhere I go now, I still wonder why people want to be “normal” . And the funny thing is they struggle so hard to do this thing they call “fitting in”. What IS that, anyway? I had an interesting conversation with my niece, just the other day. I was asking her , about a certain person , “Why is he dressing that way?” ( Meaning goth, emo, shopping at HotTopic, you know the whole ‘look’) She said , “Well, he’s making a statement I guess. Trying to stand out. ” So I asked her, “But if EVERYONE is doing that now, dying their hair, getting tattoos, going “goth” , and shopping at HotTopic, are you really making a statement? It’s not. It’s the new ‘normal’, isn’t it. ” She didn’t really know what to say to that. See, I don’t have a single tattoo. I don’t dye my hair technicolor. I’m not some trendy gender. Been married to the same guy for almost 21 years. I don’t have a nose ring, or some other odd piercing. I think people ought to be respectful to others , and pretty much live and let live. Wow. In this day and age, guess what? I’ve become the new bizarre. And to quote Baudelaire, “It’s beautiful. “

I had both a saddening and inspiring conversation yesterday on a FaceBook page I follow. It posts funny and interesting quotes , with the kind of things that people usually can smile at , or find something to perk their day up. Well, while I was scrolling I saw a quote that said “Everything that’s difficult , you should be able to laugh about. ” Underneath , a young woman had written, “Well, what about terminal cancer? Chronic depression? Unending pain?” And I suddenly felt very sad. I felt compelled to reply to her , so I wrote, “Well, I can’t speak for terminal cancer, as I haven’t had that particular wellie, but I have had depression , suffer from more chronic health issues than would fit in this paragraph, and pain that would drop a bull-moose, and YES, I have laughed AT and THROUGH all those things, as crazy as it sounds. Once you get to a certain point, it all becomes so ridiculously bizarrely fantastically insane that this should all happen to one person that all you CAN do is laugh.” She replied that she no longer even had the energy TO laugh. She said, “I have lost my joy, and I don’t know what to do to get it back again. How do you find your joy with all you have going on in your life?”

I didn’t even have to think. I knew exactly what to tell her. I’ve learned so much in my more sick than healthy years. I said this, “I understand. My way of dealing has been to cut out everything absolutely unnecessary in my life. Toxic people. Toxic situations . Read more of the things that bring me joy. Spend more time outside when I can. Be with the people I truly love. Unplug from all the garbage on television and internet. Eat the food I like, even if it’s not necessarily healthy, lol. Laugh at ridiculous things. Just take stupid good care of my self , even if it seems selfish. Like insanely long baths, if that’s what I feel I need. Stop when I’m tired. Which is often. Tell the doctors what I think. Even if it’s NOT what THEY want to hear. Make it about the things I TRULY NEED. Journal, and write, and go back to the things I loved when I was 10 and 15 and even 20. I blog, I run my lupus support page. I speak my mind about the things that I think are important. Like being kind. I color . I Zentangle. I listen to good meditative music. I listen to trashy 80s metal, lol I sing, and take photographs and write bad poetry ” This has been my way of finding myself. You have to. There will not always BE happiness, or even laughter. But I do believe there IS always JOY. Sometimes we must find the joy in the waiting, the joy is in the fact that we are making it one more minute in this craziness we are dealing with.

Don’t get me wrong, I have days where sometimes I wonder where the joy will come from, but it pops up in the funniest , most surprising places , when I least expect it. I refuse to give up on it. I hope to always, always be able to ……………..

I was in the doctor’s office again this morning . ( Big shocker there, right? Heh. ) No, with lupus and it’s many lovely cab-riding co-morbid leech-y partners sometimes weekly visits are a given . Sometimes even MORE than one visit per week is something you just say , “Meh.”, to, at this stage. I’ve been feeling puny as my Daddy says since last week. Without going into gory details, ( Oh, who am I kidding……..tossing the lunch monkey, making “the noise, that noise that shall not be named” as my teenage sons say in dramatic tones, general all -over pain, congestion of the size that back-hoes are needed to haul away, and just basically wishing I could curl under my floofy grey ginormo cover and dis- a-frickin- pear) . I finally gave in today and went, where my nurse Cynthia gave me the “look” , meaning ,”And you didn’t call me last week ‘WHY , YOUNG LADY?!?” Sigh. I know. ‘Cause I’m a moron. General knowledge at this point. Anywho, that tidbit of miscellany aside, she got me all vital-ed and everything , and I saw the doctor , who’s a peach. If you can say that about a jolly 260 pound linebacker sized gent who looks like he crushes coconuts in his spare time, but is really the kind of dude who takes his little girl to get her nails done Disney Princess style. I might say it, but maybe not , like to his face. 🙂

So turns out , I don’t ( By the grace of God , have the actual flu or strep , which IS going around, GAG me with a thousand troll toenails. ) I DO however have a severe sinus infection and probably like bronchial junk which goes with. ANYWHOOOO. So this next part requires kind of a backstory so that you can understand the following without me seeming like a total and complete loon.

See , I’ve been sick, for a very , very long time. Since childhood. And in the early 80s there was not a whole lot of knowledge about auto immune disorders, especially in children. I mean , there is still not a slew of things known about it now, even in adults and back then in children , you might as well have been an alien. So I was in the hospital. A LOT. Pretty scary experiences for a small child, you have to admit. But I was actually pretty lucky. I got to go to the hospital I was born in . And see the doctor who delivered me, and the nurses who worked there? I went to school with their kids, who were all my age. And our hospital was always a little bit old fashioned, and I remember it had the cast iron beds. The neat what people consider the “vintage” kind now. Our town was so small that the mayor was the X-Ray tech. The hospital cleaning lady , was my church’s secretary and roll taker. One of the nurses was the police chief’s wife. I’m named after the delivery nurse who helped my Mom in labor. I said all that to say this, one of the nurses there was always particularly close to me. She just seemed to always know when I needed something. I always tried to be brave, because I know being sick freaked my parents out. They didn’t know what was wrong with me , in those early days, and didn’t really have a way to pinpoint it. They just knew I was frail and in a lot of pain. But Cynthia, she just knew how to set it right. With me, AND with them. And she had this great laugh, when you heard her in the hall, you just somehow knew, no matter what things would be okay.

The funny thing is, that’s her that works in my local doctor’s office now. THAT Cynthia. While I was sitting in exam today , waiting to get my injections for my infection, I heard that laugh, and started to tear up. I couldn’t help it. She comes in with the shots all ready to go, and looks at me. I told her, ” I need a hug. When I heard you in the hall laughing, it brought back so many memories of cast iron beds, and scary days, being afraid, and not knowing what was going to happen , or even if I was going to make it. But I’d hear your laugh in the hall, and suddenly I’d just know , ‘Cynthia’s coming. It will be okay now. ‘ ” And then I couldn’t speak. I was just hugging her and bawling my eyes out. You just don’t know how much stuff like that means to someone.

She told me , that she had needed that today. So I was glad I said it. Oh how blessed I have been to have had my care team from PCH and Mercy Medical. My hometown. And if you have people like that in your life, tell them! Tell them now. Don’t wait. You don’t find them everywhere, trust me. I have trusted these people with my lives , countless times, and they have earned my gratitude, my heart, and yes, I tell them without shame, before it is gone, the time has passed, and they aren’t here anymore. I tell them, ” You mattered to me!! I love you!”